Impact of Covid-19 on people living with arthritis

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Arthritis Ireland Annual of Report Impact Covid-19 2019 on people living with arthritis

Annual Report 2019

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Introduction from the Chief Executive

This has been an extraordinary year, one in which lives have been lost on a tragic scale, communities upended and economies left reeling. No sector of society has been left untouched by the Covid-19 pandemic.

As we publish this report to coincide with World Arthritis Day 2020, we appear to be entering the second wave of the pandemic in Ireland. The number of daily new cases is matching the peaks of the early part of this year. The pressure on our hospital system is increasing and once more our lives are curtailed in an attempt to bring the pandemic under control.

The Covid-19 crisis is still only months old; but in its wearying effect, it feels like it’s been with us for years.

However, we cannot afford to be tired or lacklustre in our collective efforts to defeat the virus. This is a time when we need the strength of our community spirit to shine through.

In June 2020, as we began to emerge from the first phase of the lockdown, Arthritis Ireland launched a survey to gain a better understanding of how Covid-19 was impacting people with arthritis. We knew from the enormous number of calls to our helpline, visits to our website and engagement with our support groups that many people were struggling and desperate for information.

This report presents the results of that survey, which was completed by 1,133 people. While one-in-five respondents (18%) were diagnosed within the last two years, others were living with arthritis for many years – one respondent was diagnosed in 1958.

The findings highlight the impact of Covid-19 on people’s physical and mental well-being. Nearly half the respondents spent less time doing physical activity during the lockdown than before and threequarters did not participate in any online exercise classes.

Covid-19 and arthritis report

Two-thirds said that they felt more nervous, anxious or on edge during the lockdown, than they would ordinarily. More than half felt more lonely, while 85% often or sometimes worried about getting the virus.

One of the key findings from the survey is the impact that the pandemic has had on people being able to access rheumatology services within our health system.

Forty-four per cent of respondents with inflammatory arthritis had an appointment with their rheumatologist cancelled or postponed during the pandemic. One in ten had an infusion or injection treatment cancelled or postponed, and a similar percentage experienced delays in getting their medication prescribed by their consultant.

We know and understand the pressure that the health system is facing right now. However, we need urgent action to ensure that people with arthritis can access the health services they need in a timely fashion.

Arthritis is a chronic, destructive disease – it doesn’t stop while we’re trying to solve the pandemic.

This is a call, therefore, on the Minister and the health service to implement patient-centred, cost-effective and achievable solutions to address this situation.

People living with arthritis cannot afford to wait.

Gráinne O’Leary Chief executive 12 October 2020, World Arthritis Day

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Results

The Covid-19 and arthritis survey was launched in June 2020, towards the end of the initial lockdown in the pandemic. The survey was open for three months and was undertaken by 1,133 respondents. However, not all participants completed all of the questions.

Recruitment for the survey was primarily through Arthritis Ireland’s social media channels (Facebook, Twitter, Instagram, LinkedIn), as well as via its website and ezine.

Sociodemographic profile The overwhelming majority of respondents (87%) were female, 12% were male, while less than 1% identified as non-binary or preferred not to state their gender.

In terms of age profile, 9% of respondents were aged over 70, 37% were aged 55-69, 28% were aged 45-54, 18% were aged 35-44, 8% were aged 20-34 and 1% were under 20. A graphical representation is provided below.

Some 26% of respondents were living in Dublin, with a further 29% living in the other Leinster counties.

Munster is home to 29% of respondents, Connaught to 11% and 5% of respondents were living in the three Ulster counties.

Disease profile Respondents were asked to indicate what type of arthritis or related condition they have.

More than one-third (34%) of respondents had osteoarthritis, 46% had rheumatoid arthritis, 21% had psoriatic arthritis, 16% had fibromyalgia and 9% had ankylosing spondylitis.

Comorbidities was a significant issue for many of the respondents. Of those living with rheumatoid arthritis, almost one-fifth (17%) also had osteoarthritis, while 13% also had fibromyalgia. Of those aged over 70, 64% had osteoarthritis, 15% had osteoporosis and 39% had rheumatoid arthritis.

Eighteen per cent of respondents were diagnosed within the past two years. The median duration since diagnosis was 10 years and the average disease duration was 12 years.

Age profile of respondents to the survey

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Arthritis Ireland

Condition

Diagnosed (n = 1,133)

Ankylosing spondylitis or non-radiographic axial spondyloarthritis

104

Fibromyalgia

186

Gout

27

Juvenile idiopathic arthritis

14

Lupus

24

Osteoarthritis

380

Osteoporosis

65

Polymyalgia rheumatica

6

Psoriatic arthritis

234

Raynaud’s

52

Rheumatoid arthritis

520

Scleroderma

6

Sjogren’s syndrome

35

Condition profile of respondents to the survey

Experience of Covid-19 Just 1% of respondents had tested positive for Covid-19 and were self-isolating at home. None of the respondents had tested positive and were being treated in a hospital or care facility. Eleven per cent of respondents had tested negative for Covid-19.

However, the overwhelming majority (87%) had not displayed any symptoms of Covid-19 and had not been tested.

Nearly three-quarters (73%) of respondents cocooned at some stage during the lockdown. In terms of the decision to cocoon, 56% of respondents relied on advice from the Department of Health or the HSE. One-third (32%) based their decision on advice from their GP, while 20% relied on advice from their rheumatologist.

Physical activity Forty per cent of respondents said that they undertook physical activity for recreation, sport, exercise or leisure on at least five days during a typical week during the lockdown. Almost one-third (29% typically spent 30-44 mins doing physical activities on one of those days.

Significant differences emerge in the levels of physical activity undertaken when broken down by age of the respondents. It is noteworthy that with the exception of the small number of respondents aged under 20, the over-55s were the most physically active during

Covid-19 and arthritis report

the lockdown. Forty-eight per cent of respondents aged 55-69 and 40% of those aged over 70 reported that they were physically active on at least five days a week during lockdown.

<20

20-34

35-44

45-54

55-69

70+

51%

29%

28%

37%

48%

40%

Percentage of respondents undertaking physical activity on at least 5 days per week during lockdown

The National Guidelines on Physical Activity in Ireland recommend at least 30 minutes a day of moderate activity on 5 days a week (or 150 minutes a week).

Older adults are advised to focus on aerobic activity, muscle-strengthening and balance. This chimes with EULAR recommendations on the effect of exercise and physical activity promotion in people with arthritis, noting that physical activity is an integral part of standard care given its effectiveness safety, and feasibility.

Forty-five per cent of respondents said that they spent less time doing physical activity during lockdown than they did before Covid-19. One-quarter (27%) of respondents spent about the same time, while 27% spent more time being physically active.

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“I did less physical activity during Covid because I am fearful of interaction with other people. I swim in the sea as I find walking too sore. Before Covid I swam in the sea every day. During lockdown I could not swim for more than 12 weeks.

This was extremely hard as swimming was my only way of exercising that was pain free.

”

“I used to go to gym as I found the treadmill and elliptical machines were great

for a workout with minimal pain. I also used to hike a lot at the weekends. But now I avoid the gym as it seems unwise to use one, and I avoid public transport which means it’s hard to go hike (and I do not drive). I also feel quite anxious and stressed a lot with the pandemic, which makes me feel less motivated to exercise.

”

“My main form of exercise is attending AquaFit classes at my local pool, and all the pools have been closed during lockdown.”

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Arthritis Ireland

Amongst the reasons respondents gave for being less physically active during the lockdown were:

Mental health and well-being

“I did less physical activity during Covid because I am fearful of interaction with other people. I swim in the sea as I find walking too sore. Before Covid I swam in the sea every day. During lockdown I could not swim for more than 12 weeks. This was extremely hard as swimming was my only way of exercising that was pain free.”

One of the significant challenges of the Covid-19 lockdown, cocooning and other measures of social isolation has been the impact on people’s mental health and well-being. Almost one-quarter (23%) of respondents to the survey reported that they often felt lonely during the lockdown and 46% said they felt this way some of the time. Fifty-four per cent of respondents said that they felt more lonely since the start of Covid-19 than they would ordinarily.

“I used to go to gym as I found the treadmill and elliptical machines were great for a workout with minimal pain. I also used to hike a lot at the weekends. But now I avoid the gym as it seems unwise to use one, and I avoid public transport which means it’s hard to go hike (and I do not drive). I also feel quite anxious and stressed a lot with the pandemic, which makes me feel less motivated to exercise.”

“My main form of exercise is attending AquaFit classes at my local pool, and all the pools have been closed during lockdown.”

A noticeable feature of the lockdown was the large number of online exercise classes which were delivered online. However, only one-quarter (23%) of the respondents to this survey participated in any online exercise class on Facebook, YouTube or Zoom. This dropped to 13% of respondents aged over 70, although some 42% of respondents aged 20-34 undertook online exercise classes during the lockdown.

Similarly, 26% said they often felt nervous, anxious or on edge during lockdown, and 50% experienced these feelings some of the time. Again, this was considerably increased relative to pre-Covid: 68% of respondents said that they experienced these feelings more than they did prior to Covid.

In terms of the specific contribution which the pandemic has made to increasing anxiety levels, 85% of resdents reported that they often or sometimes worried about getting the virus.

Seventy-two per cent of respondents who were on immunosuppressants said that they often or sometimes felt more at risk of catching Covid-19, while 73% often or sometimes worried about being very ill if they got Covid-19. Half of respondents often or sometimes worried about getting Covid-19 and being a burden on the health service.

On a positive note, more than three quarters (77%) reported that they often or sometimes felt that they had a good routine and structure in their life.

Often

Sometimes

Rarely

Never

I’m worried about getting the virus

40%

45%

10%

4%

I’m on immunosuppressants and feel more at risk of catching Covid-19

47%

25%

8%

20%

I’m on immunosuppressants and worried about being very ill if I get Covid-19

44%

29%

10%

18%

I’m concerned about catching 20% Covid-19 and being a burden on the health service

30%

23%

27%

I miss seeing my family and friends

67%

27%

4%

1%

I feel less motivated

41%

39%

13%

8%

I feel I have a good routine and structure in my daily life

32%

45%

17%

5%

I’m worried about supplies of my medication

6%

16%

25%

53%

Covid-19 and arthritis report

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Access to health services For people with arthritis, one of the challenges of the pandemic was accessing health services.

Forty-four per cent of respondents with inflammatory arthritis had an appointment with their rheumatologist cancelled or postponed during the pandemic. A similar percentage, 48%, did not have an appointment cancelled.

Another key finding is that 32% of all respondents had scans, blood tests or other tests cancelled or postponed during the pandemic.

Allied healthcare professionals, like physiotherapists and occupational therapists, play a key role in the delivery of care to people with arthritis. Here too Covid-19 had an impact on the availability of these services, with almost one-quarter (23%) of all respondents reporting that they had an appointment with a physiotherapist or occupational therapist cancelled during lockdown.

Employment status Covid-19 has had a catastrophic effect on the economy, with huge numbers impacted in terms of their employment status.

Patients whose rheumatology appointments were impacted by Covid-19

Nine per cent of this cohort had an infusion or injection treatment cancelled or postponed during lockdown. Similarly, 10% experienced delays in getting their medication prescribed by their consultant.

Twenty-two per cent of respondents reported that they were employed and working from home. Just 11% were employed and still going to their place of employment. Similarly, 11% were employed, but off work at the time of the survey due to Covid-19.

Two per cent were furloughed or on a pandemic employment support programme, and 2% were unemployed due to Covid-19.

When asked to compare their financial situation during the pandemic and before, 21% said that it was worse, 66% said about the same and 14% said that it was better.

Employed, but off work due to Covid-19

11%

Employed and still going to your place of work

11%

Employed and working from home due to Covid-19

22%

Self-employed

5%

Unemployed due to Covid-19

2%

Unemployed

8%

Furloughed/on Covid-19 employment support programme

2%

Retired

21%

Looking after home or family

10%

Carer

2%

Retired

3%

Studying or training

2%

Impact of Covid-19 on respondentsâ&#x20AC;&#x2122; employment status

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Arthritis Ireland

In their own words

“I am a primary school teacher. I have been assessed by MedMark as being high risk group! So I was not given the option of working from home in September. I find it hard to teach with a mask on but I do! I feel completely vulnerable in my classroom as in order to do my job, I must work one on one, in close proximity with individual pupils who require help.

“I learned to slow down and listen to my body and what I needed to do. Very positive.”

I am very worried about the repercussions for me if I do contract Covid-19. Why are no provisions made for people who are deemed to be at high risk! I have given so much dedication and energy to my job down through the years even when my arthritis was flooring me... I feel so let down, exposed and not valued!!! It’s shocking!”

“I have as much as possible adhered to the guidelines set down by the Department of Health and it has worked in so far as I did not contract the virus, but I now find that because of a lack of exercise I now have a lot of catching-up to do in that sphere.

Also because of the outbreak I have to wait on x-rays for my trapped nerve and occupational therapy and any assistance or visit from the public health nurse.”

“I worry for the children with arthritis returning to school mixing with asymptomatic children.”

“I feel that a lot of people who have no health issues don’t take it seriously and that makes me nervous for going in public places also makes me nervous, for going back to my job that involves working with the public a lot. I’m not on immune suppressors, only anti-inflammatory meds. My rheumatologist talked about biologic meds in February if a course of steroids didn’t work, but I don’t want to go on any other meds now during the Covid pandemic.”

Covid-19 and arthritis report

“Life became simple and more relaxed and focused on more of healthy living, have changed more of my diet and did more exercise.”

“I am 31 and have RA. I feel less vulnerable to those over 60 with underlying health conditions and have still had to cocoon for the last 6 months.”

“I was frozen with fear for about 5 weeks.

Missed my daughter and people in my life.

This was the hardest time in my life, and I’ve had very hard times.”

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Arthritis Ireland 1 Clanwilliam Square Grand Canal Quay Dublin 2 D02 DH77 www.arthritisireland.ie Tel 01 661 8188 / 1890 252 846